Be careful what you wish for…

Be careful what you wish for…

…because you just might get it.

When I wrote about autism for the first time in 2010, I felt a bit like I had to justify myself through my son’s diagnosis. I explained what we went through to get him formally diagnosed, and how through that process, I’d come to suspect that I have Asperger’s Syndrome. However, some sections of the autistic community don’t accept self-diagnosed Aspies as “legitimate”. It seems that there are many people who do a couple of online “autism tests”, then declare themselves to have Asperger’s syndrome.

Because of this, I’ve been hesitant to write about it further. I wanted that formal diagnosis. Everything that I read, and the reflections that I saw in my son said to me “this is you, too”, but I wanted a clinical psychologist to sit across from me, and tell me that it wasn’t my imagination.

At the end of 2013, I finally found myself sitting in a little room facing the psychologist who didn’t say the words I wanted to hear. “It’s not called ‘Asperger’s Syndrome’ any more. Since the release of the DSM-5 a few months ago, it’s now called ‘Autistic Spectrum Disorder’ and you’re most definitely on that spectrum.”

There it was. It was official. It felt weird; while I could no longer technically think of myself as an “aspie”, I was now the owner of one (1) autistic spectrum disorder diagnosis.

Leaving that appointment, I felt as if I was walking on air. I felt vindicated and so relieved. I wasn’t imagining things. I really do see the world differently. Relationships are harder for me, and that’s OK!

That sense of relief lasted for about 12 hours. The next morning, I felt like my world had fallen in.

What I didn’t realise until it was too late was I’d actually been hoping I was wrong. Buried under everything else, I’d been hoping that with the right technique, or counsellor/shrink, the right prayer, or a miracle drug, one day everything would shift and fall into place; all the things that seem to come so naturally to others, but slide right past me, would make sense. The constant sensory weirdness and little tics I constantly had to work at hiding would disappear. I’d no longer have expend energy trying to appear ‘normal’ (aka ‘Masking‘). Relationships would no longer be mysterious; I’d know the right thing to say most of the time. I’d know when to pick up the phone, and the “how” & “what” of making and being a friend. I’d finally be able to feel that friendship, that sense of connection to other human beings.

In that moment, I discovered that I’d had that hope, and that it had been irrevocably torn from my hands. I will never be “neurotypical”.

In “As Good As It Gets“, Jack Nicholson’s character asks “What if this is as good as it gets?”; I found myself staring down that barrel. This is it.

At nearly 40 years old, I realised that all of the time and energy I’d invested in trying to hide all of my “weirdness” and attempting to “be normal” seemed to have been wasted. I could have invested it in learning new skills, or becoming deeply skilled in something. Anything else. Something that might have made me more valuable to an employer.

For many years I worked under the theory that if you’ve got a high enough IQ, constantly take in seemingly trivial information, and process conversations fast enough, you can appear relatively normal through a “brute force” approach. In day-to-day life, I’m constantly assessing situations and running them through a set of internal filters, to come up with the right responses.

At the age of 12, after seeing a story on TV about “body language”, I bought the author’s book (that’s pretty normal, right?). I tried to develop interests outside the narrow range of things I was interested in, and at the very least, store the information away for future reference. I constantly soaked up information.

What I didn’t realise until it was too late, was that the behaviours were always running in the background of the computer inside my skull; there is a cost to “normality”. There’s no such thing as a free lunch. The more information you take in, the more you need to sort and assess. The more people you relate to, the more you have to remember. That constantly-on-always-processing ‘brute force’ takes far more energy to maintain than I’d realised. On top of that, the older you get, the greater the cost.

I feel like being autistic has cost me in other ways, too.

2017 was an absolute shocker of a year.

Personally, the tremors started in late 2016, when the company I worked for was sold to another company; I was hired by them, and promoted into a position I did not feel I had the necessary skills or training for. I don’t cope well with change (something that’s common for most of us on the autistic spectrum). These changes drove me into the worst anxiety I’d ever experienced, and a few weeks later I was sitting in the doctor’s office begging for help. I was prescribed an anti-depressant. Two months later I spiraled into a deep & dark depression that nearly ended my life. I went back to the doctor, who increased my dosage and referred me to a psychologist. In turn, that psychologist uncovered something that I’d been trying to avoid for the last few years, but that’s another blog post.

I had made no secret of the fact to the GM who hired me that I didn’t feel that I was ready to take on the position he was offering, but he told me believed in me and I’d do fine. With the medication keeping the anxiety down to a dull roar, I gave it my best. Unfortunately, it turns out that my best wasn’t good enough.

By late 2017, our new GM had come to the same conclusion that I’d suspected; I was offered a different position within the company, that I have since taken.

On one level, this was a relief. Every day was a fight to keep going and try to manage the mountains of information that were coming at me.

On another, I felt crushed; “If only I was ‘normal’, this wouldn’t have happened.”

Even now, over four years after being diagnosed, I’m still trying to come to terms with what it means to be autistic; to accept myself as I am. I want to see my strengths, but all I can see are my weaknesses and failings.

But wait… that’s not all. Along with anxiety and depression, another condition that is often co-morbid with autism is ADHD. While seeing my current psychologist, I asked if the fact that I felt constantly distracted and struggled to maintain focus (something I’d complained about to multiple psychs over the years!) could be ADHD.

She responded with a shocked “Wait! I didn’t tell you!?! YES! We need to get you on medication.”

So this is where I find myself at the beginning of 2018. Autistic; medicated for anxiety, depression & ADHD. Sober for 444 days. Still trying to understand who I am, and how I fit into the world. I’ve been trying to write this blog post since I was diagnosed; indeed, over half of the post was written in March 2014. I plan to write further about autism, so this is my “coming out as autistic” post.